Health log of E’s symptoms & sicknesses
2024
Sept 2023-May 2024: Elsie was only mildly sick a few times the entire school year, and Flonase did help her sleep or even seemed to prevent colds from getting worse. However around May, she had a small cold and Flonase was not as effective at helping her exhale, so I added Motrin and while her breathing was still labored, she was able to sleep.
July 2024: On 7/12 out of nowhere, with no symptoms of any kind, she started having stridor and other noises after about two hours of sleep. This got worse and worse, and giving her Flonase and Motrin did not seem to help much.
First night: We were both awake all night, me shaking her back to make her exhale.
Second night: Still the same, and she cleared her throat all day but was otherwise playful and not ill.
Third night: That day congestion set in, and that night was especially awful for sleeping. Flonase (2 sprays of Sensimist in each nostril) + Claritin + Motrin + Xclear saline spray + Vicks did not seem to make a difference, and she was tossing all night and never really slept. I noticed she slept with her mouth closed, and when I'd make her open her mouth and exhale, she was able to do it without sounding like Darth Vader. Pediatrician Dr. Gunjan Rao prescribed Budesonide via nebulizer, twice daily for two weeks.
Fourth night: Budesonide seemed to help her sleep, but she'd occasionally make stridor sounds, Darth Vader exhales, or actually a gasp/wheeze akin to an asthma attack or apneic incident; these would last about 10-30 seconds then disappear after she'd change position (any position), allowing her to return to sleep. I ordered her a Fitbit watch to track her ox levels, which ranged between 94-98.
After this cold, which lasted 10 days and had no other symptoms besides a runny/stuffy nose and productive cough, Elsie also began clearing her throat rather dramatically, especially right after drinking anything - sometimes for an hour or more. We put this down to residual postnasal drip from the cold, but the throat clearing continues to happen every time she drinks, and sometimes after exertion, and often escalating to a short cough. She also has had at random times a solo barking cough when laughing really hard.
August 2024: Saw Dr. Grant (pulmonologist) at Mt. Sinai for an eval. She advised to try Atrovent in nebulizer at night the next time she gets sick.
September 2024 (Bronchiolitis #1)
On 9/9, Elsie began to snore, and the next day had a low fever and mild cold symptoms (but good energy and playful). This later developed into bronchiolitis for two weeks.
Mon / Day 1: gave her nebulized budesonide and saline nasal spray at night, but this did not help much as she had labored exhales and would wake up crying from inability to breathe well.
Tues / Day 2: trialed nebulized sodium chloride followed by nebulized Atrovent before bed. She slept ok for a few hours (9:45p-12a), started having some labored breathing (12a-2a), then had severe hypoxic episodes with brassy coughing fits that would wake her up and make her gasp, which might have been when the Atrovent wore off. A medical-grade oxygen monitor, used when she woke up (4:30-6a) showed her ox levels bouncing between 85 and high 90s, averaging low 90s, with the machine's alarm going off (< 88) up to ten times in one hour. I gave her Flonase and eventually at dawn she went back to sleep, prone, for a few hours and slept fine, with ox monitoring off. I tried (unsuccessfully) to get her in to see pulmonologist, then emailed the doc about a suggested course of action.
On the same day, my own integrative doctor, an anatomy expert, suggested Elsie might be lymphatic reactive, and to ask her pediatrician or pulmonologist to test her for elevated levels of leukotriene, then consider using a leukotriene inhibitor like liquid glutathione in nebulizer OR a low dose of oral NAC (if she's confirmed not asthmatic and not sulfite sensitive).
Wed / Day 3: Developed a consistent cough during the day, occasionally sounding like a barking cough by evening. Before bed, we did nebulized Budesonide, followed by nebulized Atrovent, and saline spray in nostrils. Sleep was overall better: silent for 2.5 hours, then somewhat labored exhalations on her back for a few hours, improving when changing position, and she was awake (according to Fitbit data) between 4:30-6, then up at 7.
Thurs / Day 4: wore the ox/heart monitor from 10:45p-2:45a. Atrovent + Budesonide at 10pm. At 1:30a, the monitor alarm began going off, but this time it was for low heart rate, and ox levels were generally normal (high 90s, only once dropping to 91 that I saw). Heart rate dropped to 52-59 about every minute or two for over an hour, while she was sleeping and in various positions (side, stomach). After this, I turned off the machine so as not to wake her, and called the doctor in the morning. Her heart rate and oxygen were normal in the daytime, but cough was just as bad and she had little appetite.
Fri / Day 5: Cough very bad all day. Pulmonologist was less concerned about the low resting heart rate but sent us to urgent care for a chest x-ray, which showed bronchiolitis. Prescribed Flovent in inhaler, which we started alongside nebulized Atrovent, nebulized sodium chloride, and also Motrin. Slept pretty well, with minor labored exhales, but I had to turn off the monitor since her heart rate would drop below 60 quite frequently (setting off alarm).
Sat / Day 6: Cough still bad, with shortness of breath. On Atrovent every 6 hours, Flovent morning and night, saline in nebulizer, and Motrin before bed. Some labored breathing on back in the night, but did not monitor ox due to the alarm. Fitbit showed a 95 average. 100% ox in the morning.
Sun / Day 7: Cough still bad, with shortness of breath. On Atrovent morning and evening (waiting to hear from doc re: continuing every 6 hours), saline, inhaled Flovent, Motrin before bed. Better sleep, Fitbit showed avg ox at 96.
Mon / Day 8: Same as day 7. Lots of Manuka honey. I put a wedge under her mattress to sleep at an incline, and sleep seemed calm and was longer (11:30-9a) but the Fitbit showed avg ox at 93, which was a bit worrying.
Tues / Day 9: Same meds as day 8. Slightly less coughing (more in the morning). Went outside and she did not cough as much (or as loudly/bronchial) when playing on playground. More Manuka honey. Atrovent + Flovent morning and night, plus Saline in a.m. and Motrin before bed. Overnight ox average was 94.
Wed / Day 10: Turning the corner, less coughing in general and with activity. Same meds as previous day except I did not give her Motrin before bed. Added Epsom Salts to bath. Average ox 93 that night.
Thurs / Day 11: Less coughing, mostly in morning. Atrovent + Saline + Flovent in morning, Atrovent + Flovent at night. During the day, she again started clearing her throat, especially while eating/drinking, which during this sickness she had stopped doing; I interpreted this as her trying to prevent a cough. Seemed to sleep quietly and deeply at night, but oxygen warning on Fitbit showed 92 average in the morning.
Fri / Day 12: Still clearing throat, some coughing in the morning but otherwise on the mend. Same meds as day 11. As an experiment, I removed the wedges under her mattress that created an incline, and average ox that went back up to 97 (although correlation doesn’t equal causation, so who knows).
Sat / Day 13: Better, minimal coughing but still a barking cough when it happens. Ox was 95. Same meds.
Sun / Day 14: Same as 13. Ox Sunday night was back down to 93, though she appeared to sleep quietly all night.
Mon / Day 15: Back to school. Same meds. Ox was 96. Only occasional cough, so I’m stopping the Atrovent after tonight.
9/26 – Developed a minor runny nose; used Flovent inhaler before bed, and Xclear. Slept 90 minutes fine, then developed some breathing problems on exhales, woke up once and sat up to breathe better. Ox was average of 96.
9/27: Fine during the day, Atrovent + Flovent at night and slept pretty much normally, average ox was 94.
October 2024 (Bronchiolitis #2)
F 10/4 – Seen by Dr. Scott Rickert (pediatric ENT @ NYU Langone). Basic exam showed everything normal, but he was briefed on the care plan and agreed that conservative treatment was best until results of sleep study were in and we could determine whether diagnostic procedures were warranted, to rule out causes of airway obstruction. Said he would work alongside Dr. Grant going forward.
S 10/5 – Elsie started reacting to some virus, beginning with clearing her throat constantly, escalating to light coughing. Interestingly, I did not notice the typical breathing issues during sleep which normally indicate the start of a virus.
Su 10/6 – 100.6 temp and began having a bronchial, barking cough again, but good energy and sleeping was fine (ox levels averaged 97). Atrovent, Saline, Flovent at night.
M 10/7 she had slight nasal congestion as well. She seemed to improve after the Atrovent, with coughing fits getting worse after it would wear off and being very bad for the afternoon and evening. Slept ok that night, average ox 97, used Flonase at 4a when she woke up congested. Temps between 99-100.7.
T 10/8 less coughing fits (sporadic coughing and consistent light coughing/throat clearing) but more nasal congestion, less energy, temp staying at 100.7. Pulmonologist called and suggested to give more Atrovent (third dose in afternoon, dose during night if necessary) and watch for any wheezing (which there is not). Thinks it’s a cold/virus and the barking cough is consistent with tracheomalacia.
W 10/9 – less energy, temp up to 101.7. A bit less coughing. Switched to Atrovent in inhaler. Nighttime ox averaged 95.
Th 10/10 – 100.4 or less, normal energy. Saw Dr. Rao at Tribeca Pediatrics who thought it was just a virus, lungs were clear and ears and tonsils were fine. However Elsie didn’t cough AT ALL until after we left the appointment, when she started having hacking fits again. At night, 94 avg ox and some labored breathing, possibly due to congestion.
F 10/11 – No more fever, but had very bad barking coughing fits, sporadically, but especially in the evening between dinner and bedtime (even right after Atrovent/Flovent was administered) and during any physical activity. In evening, CONSTANT throat-clearing or light coughing with gasping/deep breaths in between. Despite this, tons of energy and wanting to run around, but the running would just make her hack more aggressively and then gasp. Ox averaged 93 overnight, she had snoring and woke up several times with chest congestion.
S 10/12 – Switched to Atrovent + Saline in nebulizer and she seemed a bit improved after that, less coughing or throat clearing. Afternoon dose was inhaler, since we were out. Occasional barking cough but not too many fits, though still doing rounds of gasping/clearing throat when at home. Seemed run down and later we realized the low fever was back (100.3). Went to urgent care in the evening but x-ray person wasn’t there; doctor assumed it was a return of bronchiolitis, said he did hear congestion in the lungs but did not suspect it had progressed to pneumonia, but suggested we return in 3 days if the symptoms were the same or worse and we’d have an x-ray done. Said to switch to the nebulizer form of drugs (Atrovent + Budesonide) and to “bomb her with nebs”, increasing the frequency or dosage, which I decided not to. Per his suggestion, I gave her Motrin again, meds in nebulizer along with saline. She snored but averaged 97 oxygen that night.
Su 10/13 – Bad coughing after morning meds in nebulizer, then moderate coughing with good energy in the afternoon, which we spent outside in the sun. Atroven + Budesonide in morning, Atrovent + Saline in afternoon, Atrovent + Budesonide + Motrin at night. Average ox was 97 again.
M 10/14 – Less coughing after morning nebulizer, spent most of the day outside, occasional coughs and deep breaths but seemed on the mend. Atrovent inhaler in afternoon, coughing started before dinner and I gave her Saline in nebulizer, which seemed to help. All nebulized meds + Motrin before bed again, she woke several times from breathing difficulty (minor), ox averaged 95.
T 10/15 – Some coughing in morning (before meds) and dinnertime, but good energy, although temp was 99-100.4. Heard from pulmonologist that we should consider a chest x-ray if fevers were continuing, so we went back to the same urgent care and got one. Lungs are totally clear; doctor said it’s RADS and she’s having bronchospams due to whatever virus she got this time, but there’s no more infection. Said to limit activity, continue on nebulized meds when sick but could go back to inhaled Flovent since she has no infection, although I will keep her in nebulized Budesonide until the cough is gone. Said to continue this protocol of aggressive nebulizer treatment, including saline, with every virus, and that there are three viruses circulating that all target the lungs. Suspected environmental factors might also be at play, like change of seasons/dry air. The wavering elevated temps he said would come and go, there’s nothing to do there. Coughing subsided about a day later – same length (11 days total) as in Sept. Stopped using Atrovent after 10/18 but continued on Budesonide.
10/19 – I started to realize that if her last illness really was bronchospasms, as the second urgent care doctor had thought, that perhaps Flovent might have caused it. Just as a test, I decided to keep her on nebulized Budesonide instead of Flovent for the short term. Asked the ENT about it but he never responded.
10/23 – Saw Dr. Grant for follow up. She said it’s ok to proceed on Budesonide but to track symptoms and progress and switch to a double dose of Flovent as necessary. Did airway test for inflammation, normal result but she’d just had Budesonide. Lungs sounded great.
10/24 – E started clearing her throat constantly, a precursor to getting a virus.
10/25 – E woke up with congestion, stayed home. During the day this progressed from a light cough to an occasional barking cough. I hit her with everything: Bud in nebulizer, Atro every 6 hours, saline every time, and nasal Flonase and Xclear. Good energy, good appetite, no temp, but 90 avg ox overnight.
10/26-30 – continued on all nebulized meds, 10/26 was lots of labored exhales again despite all the meds, which was disturbing. But barking cough did not develop into anything consistent, and cold symptoms improved minus some congestion. Sleep study postponed, overnight ox averaged 95/96. On 10/29 she had all the meds except Motrin but kept waking up coughing, so I gave her Motrin at 1am and she knocked back out. Stopped Motrin after 10/30.
November 2024 (virus/cough)
11/7 – Cold with barking cough
Elsie started having an barking cough a few times during the day on 11/7, but no nasal congestion. We started using AirPhysio (PEP device) before bed, and she had Atrovent, Budesonide, and Saline in nebulizer. At 2 a.m., she started having labored exhales again while sleeping, which got so bad I woke her up and gave Motrin, Flonase, and Atrovent in inhaler. Likely due to chest congestion, she continued to struggle to exhale all night. Avg ox was 93.
11/8 – In the morning she was wheezing on inhales, loudly dry coughing like a seal, and said her chest hurt a bit. Improved somewhat after nebulizer meds, but still bark-coughing esp morning and night. She had labored breathing at night as well but largely from congestion. Overnight ox said 98.
11/9 – Barking cough, lots of boogies but THANKFULLY able to blow our nose now. We she had to do, constantly. But thank God she could. Sleeping was rough, lots of gurgling noises and sneezing/choking. Began tapering Budesonide to 2/3 dose at night. Overnight ox average of 96.
11/10 – horrible congestion, constant nose blowing, seems like the flu. Low temp (100ish). Barking cough occasional. Gave Motrin during the day. I forgot to wash her nebulizer parts last night and used them again in the morning before remembering, so WHOOPS. Budesonide nighttime dose of 2/3 vial still. Sleep was better, just some congestion and wake ups but she was able to sleep. Overnight ox avg = 97.
11/11 – More stuffy than runny, cough still present, sometimes heavy coughing trying to cough stuff up. Cough would get really bad and hacking, almost throwing up, even after Atrovent. Elevated temp. Gave Motrin during the day. Sleeping was much better. Avg ox = 97.
11/12 – Boogies when forced to blow, but seems somewhat improved. Still a chesty cough occasionally. Overnight ox = 97, though first few hours she struggled with congestion. I was diagnosed with sinus infection and started on antibiotics.
11/13 – Great energy, still has boogies and raspy, barking cough with eating and activity. Slept great. Avg ox = 97.
11/14 – Still some cough, less congestion but sticky boogies when made to blow. Forgot to give Motrin this night, just the others. (Continuing to taper off of Budesonide, down to half dose at night and 2/3 in morning). Ox was 98 overnight.
11/15 – Thick, sticky boogies, lots of them. Barking cough esp when eating or drinking. Lots of energy. Wondering if E might also have something bacterial? Hard to tell. Ox 96 overnight.
11/16 – Same occasional cough, some boogies. 97 ox overnight, but she had some labored breaths on her back. Less choking when eating.
11/17 – finally less boogies and less cough, but occasional cough. Less choking when eating. Bud down to 1/3 dose at night and 1/5 in morning.
11/25ish – totally off Budesonide as of around Thanksgiving; also started giving Butyrate (with probiotic) and DHA/EPA and multivitamins daily.
December 2024
12/24, 25, 26 – Sudden breathing issues at night for three nights, but no fever or cold symptoms manifested. Atrovent, Saline, Xclear, Motrin, Flonase all used with very little impact. By night 4 she was generally back to normal.
January 2025 (Flu A)
1/18 – Woke up with a fever and running nose (no cough, no issues sleeping). Good energy. Next day fever was down and nose was stuffy. By 1/20 she was back to normal. Atrovent + Motrin used.
1/23 – starting to have some slight breathing issues at night, ox was 94 avg. Used Atrovent the next night, ox was 96 and no further issues.
1/26 – Flu A (7 days) – E and I both had runny noses earlier in the day, but her sleeping had been fine the night before. Occasional coughing, becoming a barking cough when she lay down. That night, I gave Atrovent but she started having mild problems exhaling, but was able to shift and go to sleep – slept lightly because of this. Stayed home from school the next day (1/27), temp was 100-102 but attitude good and not much coughing. Overnight ox was 96, minor breathing issues but she was able to resettle. Fever up to 102.6 the next day (1/28), doctor tested and confirmed Flu A. Attitude was good but more boogies and productive occasional cough. Needed Motrin at night, in addition to the Atrovent morning/night. Some breathing issues overnight, but minor. Ox 96-97 next few nights. On the mend by Friday (day 5).
February 2025 (RSV)
2/12 – Suspected RSV (friends got it); I started feeling like crap, but bounced back by the next day.
Woke up with fever (99-102) and congestion, but good energy and appetite. I assumed another flu and kept her home. She had had a few nights before this where I heard some apnea-like choking sounds, or she’d wake her self up snorting, but it was subtle. Atrovent, Motrin at night, did not wear Fitbit due to it causing a rash. Night of 2/12 she struggled to sleep with the congestion, and I heard labored breathing on and off. At 6a I gave her more Motrin but she got up by 7 and ran around instead of going back to sleep.
2/13 – This night was rough. Atrovent and Flonase at 9, Motrin at 10, but she woke up at 1a and was up more or less til 4ish with labored exhales and sometimes crying when she couldn’t breathe. Slept in her bed for a bit, shaking her back to get the breath out. Gave more Motrin at 3:30, and another spray of Flonase. Prepared Atrovent inhaler but I knew she hated it and last time (Dec) it really only helped for an hour, which is to say maybe it didn’t really help at all since the first hour after going back to sleep is usually the easiest anyway due to a new REM cycle. She was able to more or less sleep, just kept changing positions. Ended up spending a lot of time on her back, actually. Still congested in the morning.
2/14 – Worst night I’ve seen, maybe. Atrovent/Flonase at 9:30, Motrin at 10:30. She slept for 90 minutes with heavy, loud snoring and then really struggled to exhale. I kept shaking her back and helping reposition her, but she could barely breathe out. Got her up at 2ish and tried to do Atrovent inhaler but once she smelled it she pushed it away, half-asleep, and opted for nebulizer. I actually did a double dose: first Atrovent dose, then sodium chloride and another dose of Atrovent after that. She passed out halfway into the nebulizer treatment and it was done around 3. She slept a bit better, though shallow breaths, for the next 90 minutes or so, then started having labored exhales again. I tried to get her another dose of Motrin but she was too passed out to rouse and take it. Around 5-6 this stabilized a bit and she was able to sleep on her stomach til morning. I definitely considered taking her into ER for oxygen, but I knew the second she was awake and upright her ox would return to normal, as it does. At 8:45 she was up singing the Garfield theme song at top volume, so clearly her ox was ok at that point. Later in the day I tested and it was 100%. Still had congestion on 2/15, and now a bit more coughing.
2/15 – Not a great night but not as bad as the night before. Would stop breathing on exhale and need back to be shaken. Had more Atrovent (one dose) and saline in nebulizer at 7a, then slept another 2 hours.
2/16 – Much better night for sleeping, much quieter. Woke up a bit I think due to some apnea, but no noisy breathing.
2/17 – She was a little more subdued, had thick, glue-like greyish boogies when forced to blow (with some blood, maybe from blowing too hard) and occasional cough. Temp back and forth, 99-100.4. Slept great again, though.
2/18 – Had scheduled a sick visit, but cancelled it because she was better and no temp. Went to dentist, was all fine. Had tons of energy. Ate cake after dinner and then ran around like crazy, jumping and doing sit-ups before bed, which made her pant and drink water. This could have been what cause tracheal collapse at 2am (Atrovent was at 10). She started having noisy exhales again and apnea, so I’d have to shake her back to breathe. Should have woken her up for nebulizer but instead I gave Motrin and Flonase, since I’d skipped them thinking she was back to normal. Those helped a little in terms of her breathing getting a bit quieter, but she still had intermittent pauses in breathing and was moving a lot to find a position where she could breathe. 2-6am was rough, 6-8 was slightly better. Woke up with some congestion again. Will try to not have her run around at all before bed tonight. I’m realizing that earlier in the week, when her sleep was bad, she was also running in circles not too long before bed again, and perhaps that made her breathing worse.
2/19 – Congested again during the day, after seemingly getting over congestion, with some barking coughs. Had lots of physical activity 430-6, but tried to limit it at night. She woke at 1a and had apnea more or less the rest of the night, but not as much noisy breathing or super labored exhales. I definitely should have given her more Atrovent, and almost did at 2:30 but was so tired I just kept repositioning her (onto her stomach) and went back to sleep. On 2/20 it was still labored overnight, but not quite as bad.
2/21 – Appointment at CHOP; occasional coughing (which doc described as more “honking/brassy” than “barking”) but otherwise back to normal, no more fever. We stopped using the nebulizer after this.
March 2025
2/28-3/2 – Mild cold
On night of 2/28 (1a) she had some apnea choking and labored exhales again that would come and go – better when moving to stomach, but on and off almost as a preview of getting sick. I moved to her bed at 1:30 and she was basically able to reposition and get to sleep, though moved around a lot.
2/29 – Sounded a bit congested when waking up, then was normal and played outside all day. I gave her Atrovent/SC/Flovent before bed, and I was not woken up by her making noise, but did not sleep in her room so unsure if there were breathing issues.
3/1 – Some coughing upon waking. Good daytime energy but off and on elevated temp (99.7) and congestion. In the evening I started feeling crappy as well (nose/throat) but hoping it passes me by, like the last few viruses did.
3/2 – Some congestion, little coughing, Atrovent/Motrin/SC/Flonase but started having breathing issues at 1a, was able to get back to sleep within the hour. Normal in morning, congestion seems to be gone but I kept her home anyway because I wasn’t sure if temp would rise (plus she woke up late). I didn’t end up getting sick.
3/9, 3/15, 3/20 – Random bad nights
3/9 played with Parthy during the day, night was randomly very bad and we didn’t sleep. Fine the next day.
3/15 went to indoor playground w Taeji, lots of activity (and germ exposure). That night she only had one spray of Flonase and slept quietly til 1a and then started having labored breathing and apnea. I got her up at 1:30 for more Flonase and Motrin. This helped her sleep better for about 2-3 more hours, though likely just because I restarted her sleep cycle. Had continued problems from 4-8a til she got up. Elevated temp in the morning, but normal after that.
3/20 - Normal day, but was at Lib Science Center. Had Flonase before bed, and at 2:30a started having a coughing and sneezing fit, followed by labored exhales that went on (on and off) til dawn. Slept in her bed but didn’t give her more meds as she was able to sleep ok on her stomach.